update on Lorelei.

[Brandi]

Not much has changed. I wish i could post she is doing better but nothing has changed. They are going to see this new Doctor on thursday. Hopefully he will have some insite on all this and why this little girl is not holding onto any fat. She is so skinny now she looks like and old lady at 3.
She is normal in every way except for she has lost all the fat in her little body. She is not in pain. She plays normal, eats normal, everything normal except that one thing. I will let you all know what the new Doc says.

[LBTC]

Wow. Thank you for keeping us updated Brandi. I'm sending her a whole new batch of butterflies to keep her protected! I'm also sending some to the medical team so they can find the answer *and* the solution.

Big hugs,
~T~

[firenze11]

I hope they can find an answer soon. Maybe the new doctor will be able to fix this. At least she is not in pain and can do all the normal kid things. I'm so sorry you and your family have to go through all of this, it must be very stressful.

[Duck on Wheels]

My mom used to tell me that when I was born, weighing in at a bit over 9 lbs , a friend who came to visit burst into tears. Her own little girl, then a year old, was smaller, developing ok otherwise, but just couldn't put on weight. Well, they finally worked out that she couldn't drink milk. Once they figured out what she could and couldn't eat her health improved and she grew like a weed. Let's hope this new doc comes up with a solution for your little niece as well, and quick!

[Brandi]

I am really hoping it is something like gluten or milk. That would be wonderful! And we could get some weight back on her. I will wait to post when we have all the test done and stuff. I feel like i have made you all go on this roller coaster ride with me.
She had a wonderful 3rd birthday last week. They went to disney Land. She loves it there!

[Starfish]

I feel like i have made you all go on this roller coaster ride with me.

I don't know about the rest of the folks here, but nobody can make me go on any roller coaster if I don't choose to go!

I'll be thinking of you all...let us know!

[Brandi]

Man I wish i could say they came up with something at the new Dr today. He said whatever she has is very rare (duhh tell us something we don't know please) he suggested one fatal desease that is very rare but my sister really feels it is a stretch. He also suggested it was a different type of the aging desease that they had suggested last month. I don't know it is all stupid! I know they are not god I understand that. Just answers please!!!! We are so tired of being in the dark. And this little girl needs to put her weight back on.

[Eden]

I work in a hospital and I have the a lot of respect for the docs and nurses who work there - but no one knows a child like a parent and no one else is as invested in that childs life and health.

I'd suggest mom or dad (or even a good auntie) start doing a lot of research about her symptoms. There's an amazing array of data out on the internet these days. If there's a rare disease, there's probably a web page about someone who has it.

I've found a database that might be a place to get started. It's a rare disease database - you can use the search function to put in symptoms (just be sure to select the "all words" or "exact phrase" button or you'll come up with about ever disease in the database...) and see if there's anything there that sounds familiar.

http://www.madisonsfoundation.org/

[Brandi]

Well it turns out it is going to take 6 to 8 weeks to get the results back from a test we think is going to come back with nothing!. In the mean time she is improving just a tiny bit. But a tiny bit is very big in our eye's. She seems to be very slowly gaining back some of the weight she has lost. But again it is slow. But I am still very grateful for it. She is happy and enjoying all her new birthday toys she got this month. They are having a big birthday party for her at a park tomorrow. I would be there but I am sick with a cold so i had to back out. They don't want her to be exposed to anyone sick right now. I totally understand! I would like to post a picture of her and what she looks like now but i want all of you to remeber her like in the photo's I posted from before she got sick. My thought is if you all keep thinking of her in that state she will get back to that. That's it for now. Just wanted to update all of you who have been keeping us in your thoughts and prayer's. Don't stop!

[Brandi]

Still waiting on the last test by the way. there is just a little bit of change here and there. But she is not worse. But not but a bit better. But better then nothing at all.

[RoadRaven]

Warm thoughts from Middle Earth still coming your way... I know 6 weeks sounds like a long time, but it will pass and hopefully you will all have a useful answer for the trouble of the wait...

Awhi awhi
Rave

[rij73]

Sending good thoughts your way! I don't usually check in on the off-topic forum, but this thread caught my eye. Sorry your niece is so ill. That is very scary...

[sundial]

Brandi, has your niece been seen by a pediatric gastroenterologist? If she's having trouble with absorption, maybe the GI doc can pinpoint the problem.

[Brandi]

Brandi, has your niece been seen by a pediatric gastroenterologist? If she's having trouble with absorption, maybe the GI doc can pinpoint the problem.

I will ask my sister. They have seen so many Doc's i can not remember at the top of my head at this point. But I will ask. Just imed her about it. I will post back when i get an answer.